BY MELISSA ARMSTRONG, MD, MSC, FAAN
When I give a diagnosis of Parkinson's disease to someone in my clinic, responses vary. One woman pushed back against the diagnosis for years. As a result, she didn't educate herself about the disease and never knew what to expect. She delayed taking medication and gave up hobbies she enjoyed. She eventually admitted she regretted that period of denial and missing treatments that could have improved her quality of life.
Another patient adopted a "take charge" attitude after adjusting to her diagnosis. She learned about the disease and treatment options and started exercising regularly. She brought her list of medications and questions to each appointment. She continues to work, care for her family, and live successfully. Parkinson's disease is just one element of her active life.
Studies of people with Parkinson's disease support this anecdotal evidence. They demonstrate that those who believe they can influence their own health experience less disability than those who do not hold that belief. The same is true for people with multiple sclerosis and survivors of stroke. Those who feel they can take charge of their situation function better and report better health and satisfaction. They are also more physically active and less depressed, and have lower levels of pain.
Fortunately, anyone can gain confidence in managing life with a neurologic disease. These five steps are a good start.
1. Be informed. Learn about your disease, the symptoms it causes, what to expect, and treatment options. Keep an organized list of former and current medications, your response, and any side effects.
2. Be connected. Assemble a strong network of family and friends who will support you. Develop an open and collaborative relationship with your physicians. Establish a care team that includes your physicians, therapists, counselors, trainers, and others. Investigate local support groups.
3. Be involved. Take responsibility for managing your own health and life. Track your symptoms and medications. Make sure to take medications as prescribed. Prepare for doctor's appointments.
4. Be active. Exercise regularly. Make goals (for your life and your health!) and work towards them. Communicate goals and values with your healthcare team, discuss concerns with them, and advocate for yourself.
5. Be positive. Focus on possibilities not obstacles. Evaluate different options to make the best choices in your circumstances. Keep a healthy perspective when you face challenges and persevere.
Whether your diagnosis is new or you've lived with a disorder for years, you have the power to impact your life and health in a positive way.
Dr. Armstrong is a movement disorders specialist at the University of Florida Health Center for Movement Disorders and Neurorestoration in Gainesville and a Fellow of the American Academy of Neurology (AAN). She is also involved in the AAN's
evidence-based guideline program.